Saturday, January 23, 2010

Can CF Teens and Parents Find Common Ground??

A good friend of the CF community and puppet master Josh Mogren, brought up a great "debate" question over on CysticLife.org that I wanted to get the RSR reader's take on:

I have spoken with a few teenagers who claim that their parents are too overwhelming of a presence in their lives. While this is common place among most teenagers across the globe, what happens when you add Cystic Fibrosis to the equation? Teens feel trapped by their parents because they don't feel like they are allowed to make their own choices about their lives and learn from their mistakes. Most parents I have talked to say the reason that they are so concerned for their children is because they don't see their children doing the best they can with their healthcare and daily routines that would improve their lives. Some have seen other people's children pass away from CF and fear the possibility that this might happen to their child. So they refocus their energy toward making sure their child thrives. The parents feel (rightfully so in some respects) that they have given their blood, sweat, and tears to their children and that CF lives are too precious to learn from mistakes because the results are far too costly. CFer's and Parents....let's honestly discuss...where can we meet in the middle? How can teens understand their parents point of view and earn their trust? How can parents learn to start letting go and trusting their children? Positivity and respectful responses are a must! This is thin ice territory, but it must be traveled on...

Parents, what do you think? What is your responsibility to your child and at want point does that responsibility shift? Teens, when can you begin to shoulder some of the burden for your "cystic life"? What's the best way for your parents to handle this transition?

If you'd like to view the answers over on CysticLife please click here.

Comments (12)

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You're right Ronnie, this is a complicated subject. You said " How can teens understand their parents point of view." No person, no matter the age, can understand a parents' point of view unless they themselves are a parent. Also, teens rarely ever want their parents sticking their noses in their lives. As a parent you have to chose your battles. I know the battle I will always keep at the forefront will be my son's battle with CF.
What a great post! My oldest is only 10, but I have started really thinking about him as a teen and young adult, and I must admit, I'm terrified! The main thing I am focusing on is keeping the lines of communication open between me and my kids. I feel like if they feel they can trust me with anything, we can at least work to form compromises in terms of both teenagehood and CF. I can't wait to hear from more parents who actually have teens.
1 reply · active less than 1 minute ago
I wouldn't be too worried Suzanne. Much of it is reactionary in nature and you may just find yourself with a teen that acts like an angel...we can dream can't we? :)

If you haven't already, make sure you sign up on CysticLife.org and check out the responses by teens and parents. Very informative.
It is great to read this before my child is actually in the teen mindset, being that he is not even 2 years old it gives me some time to think. I do see how I would lean toward the overbearing side as a parent down the road but I guess what is most important is to always let my son know why he takes certain and medicines and treatments and what the consequences of not taking them. Slowly as he gets older it will be time to transfer the responsibility to him, but I do not know how I could "let go" if he is not taking his life and health seriously. =( I don't know yet.
1 reply · active less than 1 minute ago
Let's just make it a goal that CF will be wiped out by the time he's a teen :)
Hey Everyone - It's important to go and read the responses on CysticLife to this question. We had a few compelling answers and points of view on the subject. I also made a "guidelines list" from both perspectives: Teen to Parent and Parent to Teen. This discussion shouldn't end on here or on CysticLife. It's a constantly changing situation that will be different by the time CFMama's little one is a teen. Hopefully, CF will be a thin of the past by then, but until that day, everyone should continue to chime in. Especially the TEENS! Your voices need to be heard! Lots of love to all!
Jessica Hazelett's avatar

Jessica Hazelett · 792 weeks ago

Hi Everyone! I think someone read my mind! I am the mother of a 17 year old son with CF and I am terrified of not what he is doing but what he may not be doing- as in his daily meds! I find myself trying to sneak around to make sure he is doing his meds and vest treatments without alerting him to the fact! Its very difficult to trust that he will do what he is supposed to be doing when all he wants is to be normal and forget about CF. Luckily he has been fairly healthy the last few years! No hospital stays in 2 years! Yeah! But I feel like he could be doing more for his health. Ultimately it will be up to him to take care of himself.
2 replies · active 792 weeks ago
Oh my gosh Jessica! Reading your post was like I was talking about my own situation! I have a 17 year old daughter who I know is not doing what she needs to and I've never had to battle with her about her healthcare like I have been recently! I just had a conversation with her counselor this week about how to handle this...do I step back and let her learn a difficult lesson at the risk of her health or do I enforce consequences? With her going to college this fall, I can't be there to monitor her healthcare all the time so how will that work? I know ultimately it's up to her to take care of herself but it kills me to watch her "roll the dice" like this.
Jessica Hazelett's avatar

Jessica Hazelett · 792 weeks ago

Hi Tera! Yes, I too am so worried about college. I can't even think about dorm rooms or letting him go off on his own yet! He, on the other hand, says he can handle it! Anyway, if you ever want to talk my email is capt.hazelett@yahoo.com. Good luck:-)
I credit my parents for putting me in charge of my health care routine very early, by age 11 or 12, so that when the really bad adolescent stuff hit in high school, CF was not another power player in our teen issues. I was already doing my meds, calling in my prescriptions, having them delivered, cleaning my nebs, etc. I remember, at the time, that a lot of my friends and friends' parents thought it was crazy how much responsibility my parents gave me, but i know now that it was a great decision because it kept the CF responsibilities separate from the teen angst and car-key arguments, for example :0) My parents never used my health as a qualifier for other decisions (i.e. "you can't go out, I heard you coughing," and they never used my life as a comment on my health ("you must be sick because you stayed out late.") - these issues were separate in my house, and I think that was a good way to go.
Hello! My name is Shannon, I'm turning 21 next month.. so I'm not really sure how much this will count :) BUT from recent perspective all I can say is that your children and teens know you love them. My mom and I battled a few times a week when I was in high school over meds. There was never enough time, (or so I thought), and I really did want to feel normal. Also, being the all knowing 16 year old that I was, I hated that she nagged me so constantly to do them. I felt like she was trying to control my life and that she didn't trust me enough to do what I KNEW needed to be done. My doctor interceded on my behalf and helped me to start taking charge of my visits and that truly made me pro-active in my care. I had a bad year battling mycobacteria and once out became even more consistent and pro-active with ALL medicine.

My advice would be to give enough breathing room to feel an adult, and expect them to follow accordingly. Just like all good teachers, the more you expect and demand the harder your teen will work. It is extremely important to start lessening "the grip" before your teen heads off to college. In this inbetween time you can still be Mom and keep a watchful eye and they can begin to prepare themselves for adulthood with CF.

(Ronnie, I haven't commented before, but I want to thank you for such an uplifting and wonderful blog. GO TEAM!)

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